Woman Paralysing Daily from Dystonia refused hospitalization by Toronto Western Hospital
Above is a picture of me, with parts of
my body still paralysed from dystonia, including my spine, hips,legs, neck and arms, in ER December 24, 2010. All my muscles and
ligaments where damaged, causing them to be shortened and stiff in January 2003, the dystonia came after from medications I was told was going to reverse the damage after being begged by my GP not to go back to ER. All this from psychotropic drugging, especially during 2003. I received no proper care treatment or have to this day. It left me unable to lift more than a
book, prepare my own food, chop, lift pots or pans, and have to be
showered and my clothes changed most of the time. I had one doctor
tell me “that's in the past”.
On Christmas Eve Day, I awoke in the
morning to something that has been happening to me since March 2003,
and daily since April 2004 after coming off 8 years of psychotropic
drugging, the slow or fast rapid jerking of my whole body, and parts
of my body cramping and paralysing from dystonia often unable to
speak. I was cut off medications and doctors in fall 2004 and since
then it has been a daily battle to keep the movement disorder under
control and from paralysing, using natural alternatives to create
dopamine, relax my damaged muscles and the dystonia and bring down my
Central Nervous System. Froom 2006 - 2009 I was allotted one medicine on and off for dysotnia - clonzapam that was never enough and the scripts faxed in by the neurologist.
Dystonia is the cramping of groups of
muscles and ligaments, causing rigidity and often stay permanently
cramped in un-natural positions and is extremely painful. I am also
a survivor of severe ME/CFS since 1991, which has kept me mostly
bed and house-confined.
Being refused the extensive
medical care I was and am entitled to for the very complicated
physical damaged, I did what I could to keep myself alive. Over the
years the muscle and ligament damage and dystonia worsened, and I
still awoke to the slow and rapid jerking of my body, parts of me cramping and paralzying often and have been down on almost every part of the floor in my home. I used alternative
medicine to create dopamine and bring down my Central Nervous System
(CNS), however, after a period of time it would back fire and the
dystonia would cramp more.
By October 2010 the dystonia
worsened drastically, often all of me has being paralysed for hours
at a time as soon or very shortly after waking up. Blocks of muscle
on my hips and spine cramp and contract pulling my whole spine
backwards, twisted like a pretzel or pulled up almost in a fetal
position, the variations are getting more extreme. My arms have
become increasingly cramped to my chest, leaving me unable to access
the water jugs kept by my bed or call 911. But then why would I want
to call 911, when all I had endured prior from 2003-2010 was physical
or verbal abuse by healthcare staff, or refusing to hospitalize me.
911 was called this time by
my long time friend of 27 years Joseph Florence, a retired Senior
Airlines Captain. Ambulance attendants arrived, with a gurney that
does not fit in the building elevator. The building and apartments
are not wheelchair accessible either, I have been on the waiting list
for 10 years for wheelchair accessible housing and supportive or
independent care.
The Ambulance team, rolled
me in a sheet and got me out via my own manual wheelchair I can not
push, I have a power-wheelchair I am rarely able to use in my own
home and have been on the housig list for wheelchair accesssable for 10 years. They got me on the gurney in the lobby and into the ambulance,
my long time friend following behind in his car. My body was cramping
and contorting severely from the dystonia with electrical storms up
my spine, and severe tremors with both arms, as well as extensive
muscle and ligament damage underneath from adverse drug reactions in
January 2003 that I have received no care, treatments or support for.
On the way in the ambulance the Ambulance attendant said I had a
seizure as well, it was then the ambulance team turned on the red
warning light and made haste to the Toronto Western Hospital, where
they are known to have one of the best movement disorder clinics and
care for dystonia in Ontario, which I have been trying to get to
since I was first severely damaged from psychotropic drugging and a
misdiagnosis of bipolar in January 2003.
In the ambulance I felt I was verbally
pushed to give information I didn't want to and while under extreme
duress. Upon arrival I was put in an ER stall around 12 noon. I was
left there with no medical care for approximately 4-5 hours. My body
was severely contorting and cramping, with paralysis, my muscles and
ligaments pulled and feeling like they were being ripped apart,
possibly causing more damage to my arm sockets, knee caps and spine
that have already endured much damage over the years. One attendant
in ER told me “you stop doing that” while trying to get a
hospital gown on me and my body contorting and twisting in awkward
potions, my arms often going up and down rapidly from strong tremors
or cramped to my chest. The dystonia continued to progress to being
acute, and a dystonic storm which I have endured repeatedly for
years.
I was finally given saline 4 to 5 hours
later, the first bag of saline I received was about the size you
would give to a baby, and I have low blood volume as most with
Myalgic Encephalomyelitis (ME/CFS) do, some are given IV Saline
several times a week. I also belong to a group of ME/CFS survivors
that are drug dose sensitive, especially to antidepressants, but is
dependant on the medication and the individual. I had to ask for a
catheter, and more saline, and was given 2mg of valumn via IV, and
later 5 mg IV and orally which were amounts given to a child and
already had a prescription for clonzapam 2mg x3 day that has never
been enough for the dystonia or full body movement disorders or
tremors, nor was it when it was 8mg a day. Valium had been written
down prior as a “safe medication” for myself. Prior in ER
situations, full saline, oxygen and much larger amounts of valumn
administered via IV almost immediately when I arrived, once paralysis
set in often a catheter was inserted.
Joesph Florence repeatedly talked to
the ER doctor, the ER doctor would not discuss the situation in front
of me or to me the patient, which has been an ongoing problem since
2004. The ER doctor said the records stated I was to see a
psychiatrist 6 years prior, which l and my mother refused as I needed
a neurologist that specialized in damage from psychotropic drugging,
movement disorders and dystonia, the later I knew I had since June
2004, the full body movement disorders dated back to March 2003.
Mr. Florence kept reiterating that
physical damage be taken care of in any patient regardless of mental
health issues or not, and that none of the psychiatric labels I had
been given were correct. They belong to the psychiatrists that gave
them out so liberally with no factual basis. Later in the evening the
ER doctor said I was going to be released, essentially in almost the
same state I had been brought in, most of me was still cramped badly
and paralysed and no change of medications, leaving me to continue to
cramp and paralyze at home, my knee caps now damaged and often giving
out as well, or keep calling 911. Mr. Florence kept insisting for a
neurologist which I had asked for shortly after we got there, when I
could speak, as often I can not. I was told there were none on duty
by the ER doctor. Mr. Florence persisted and the ER doctor found a
neurologist that saw me around 9pm. I wasn't as acutely dystonic, but
still much of me cramped and paralysed and in horrific pain. I had
brought in some of my hospital files which showed “dystonia” back
as far as January and February 2004 but were left off as a diagnosis.
I found four suicide attempts in my medical records so far, and I
have never tried to kill myself. They already had the letter from a
doctor stating my muscles had been repeatedly damage, or weakened as
he put it from trial (bipolar) medications in 2003 and that I am bed
house-confined 99-98% since the repeated damaged of 2003, prior 85%
house-bed confined from the severe ME/CFS.
The neurologist gave me a minor check
over, my legs, ankles and my left jaw that dislocates from dystonia
and destroyed my once beautiful teeth since 2004. The neurologist
asked about the marked spots I had put on my body, which where the
worst of the dystonia was, and cause daily severe muscle cramping and
contractions that contorted my body, cramped it and paralysed it in
different positions, my arms cramped to my chest my hands often
curled in like claws.
i had been promised a 48 hour EEG with
Video in mid-2004 I was having severe seizures, and full body
movement disorders after coming off 8 years of psychotropic drugging
and 11 years of one medication that affected Gaba I had been on high
doses of since 1992 and I was refused. The neurologist said they
would pick up where they had left off, with the doctor who was to
give the 48 hour EEG with Video. I said I needed a movement disorder
doctor, I still need the 48 hour EEG with Video, however, I need a
doctor present that is also very familiar with dystonia, dyskenisa,
tremors and movement disorders, as I have a mixture, sometimes still
with seizure activity and the underlying extesnive muscle and ligament damage. We were counting on them hospitalizing me and
getting me on proper medications and the dystonia under control, and
the severe muscle spasming and paralysing on my hips and up my spine,
now all of me is paralysing, however. this was not to the be case.
I am also a
high maintenance case which many doctors don't like. I was given the
the family practice clinic information, I have been mostly bed and
house confined since 1994, almost exclusively since 2003 and only out
a few times, and this has been used against me.
I was
told that the movement disorder
clinic now was shorter wait list and I would have an appointment set
up by neurology, and, which eluded me for years, that I needed a
family doctor – repeatedly for years they have been told I need to be hosptialized I an unable to go back and forth for appointments prior to the extensive physical damage, from the severe ME/CFS alone kept me from many specialists appoints prior. I am bed and house confined 99%. However I needed
to be able to get there.
I have no qualms about telling what
happened to the world at large about psychiatric labelling, the repeated
mis-diagnsosis one absurd: Major Depression caused from the drugs,
Dissossative Identity disorder, was the latest lingo for Mulptiple
Personalities, over 40 psychatropic drugs later my child hood nicknames I
used for inner child journal work since 1992 after getting severe ME/CFS were
put down as "alters" 10 years later. That means 2 separate personalites
taking over with loss of time, I had no loss of time and no alters, and no other doctor involved reported as a serious misdiagnosis when many knew. Also bipolar, bipolar rapid cycling, none of which I had. However,
inside most of the healthcare facilities, once psychiatric is put on
your files whether a misdiagnosis or not the care and treatment you
receive can be next to none, and often includes abuse. It's taken all these years to get my files left in the condition I am in to start having them corrected. The human error across the board alone is extensive and frightening, any other business would be out of business.
The extensive medical care has eluded me for years and
continues and is a disability and human rights issue. I needed to be
hospitalized for as much as possible in several sessions which has
been an ongoing struggle since 2003. As I have a history of adverse
drug reactions quickly it makes it even more important that I am
hospitalized for any major medication change.
Mr. Florence, myy friend of 27 years, was then told I was still
being sent home in the condition I was in, still much of me
paralysed, and not stabilized. He said, “what is to be done then,
for her to be left to paralyze in bed every day and call 911 if she
is able”. There was no regard for my life and me being left to
paralyze at home, still after all these years, even more life
threatening now, often I can't get to the water beside my bed for 5-6
hours. Often I wake up and I am already paralysed or it sets in
shortly after my brain fully wakes up as it did in 2004. They could
have reduced the cramping and paralysis within several hours but
chose not to and also hospitalize me until they got the paralysis
under control, observed, assessed, and medications tried in
hospital, often botox is used for the muscle contractions and
paralysis I have, assign me a doctor in their family clinic and send
me home safe
The neurologist said I was still be
discharged in this condition, and no medication change, leaving me to
battle the paralysis at home, and given clinic numbers and a referral
which were impossible for me to get to even if the dystonia was taken
care of most of the time, until my over all health improved, and the severe ME/CFS.
The medications I have are from Med-visit, which refused any for
years citing they only prescribed for colds and flu's. It wasn't
until May 2010 I got some medication back that I had been cut off of
in 2004, not the right medication then, and not now, the amantadine
alone takes almost 5 hours to unparalzye me if I can get it in my
mouth before all of me has paralysed, and it's supposed to be 2 a day
not 1 and often only given for the first 6 months. Med-visit doctors
don't like prescribing the medications I need and it can be a week or
more before I can get one of them in and it's near an argument every
time.. I could only give old scripts to prove what I had been given
prior in 2004, and hope I would be able to speak, pick up the phone
and get to the door at any given time since 2004. Med-visit doesn't
tell you what time they are coming – the range of hours they may
arrive can be 8 to 10 hours later.
The only thing I have been left to unparalze me is alchohol which many dystonic's have had to use = for me beer which has drastically worsened the ME/CFS and Hepatitis C.
Mr. Florence had stood there
dumbfounded that this was being allowed to happen again, as it
happened to me repeatedly since I was first brain damaged in January
2003. An ambulance arrived at the hospital about 1 ½ hours later,
wrapped me in a sheet, delivered to my home and put me on my bed,
left the sheet with me and also with a severe lung infection just
starting and left. I tried to get through to med-visit for days, the
line always busy. I was left digging out old antibiotics from 2004
hoping they would still work to some degree or start calling 911
again, which I will have to do until they get me on the right
medications and the dystonia and paralysis stabilized as much as
possible as well as the “bizarre” slow and rapid jerking of my
whole body which the dopamine antagonist does stop.
I was cut off doctors and medications
in fall of 2004, homecare that was abusive was shut off in early
2006 as well as for other reasons, and my mother kept me alive with a
fractured spine and riddled with osteoporosis-arthritis. My mother
and myself begging to get a few prescriptions to try to stop the
movement disorders and the dystonia for years.
The Golden Door is there finally
waiting for me at the movement disorder clinic and the neurological hosptial in Toronto where I should have been sent January 2003, after 7 years. With the
severe ME/CFS and being mostly bed-house confined ignored, they
could have easily hospitalized me, get me on the right track and
eventually in the future with a good family in-house doctor, be out
in the world again on a regular basis and hopeful for Ampligen in my
future for the severe ME/CFS.
No one should be denied health care,
it's against the Canadian and Human Rights Charters. The College of
Physicians and Surgeons used to make doctors come in-house they
haven't for years, it's up to the doctor and most don't like high
maintenance cases and the discrimination against survivors of ME/CFS
still persist, even though given a Neurological Diagnostic Code 795
by the Ontario Medical Association, with extra billing time #K037 to
try to encourage doctors and health care to stop the discrimination.
I have been through hell and am not out
the door yet and need doctors that are willing to help me heal as
much as possible, Allopothic and natural. In 2008, another attempt
was made to have me hospitalized for everything at the Toronto
Western through the Mt. Sinai, they withdrew, and said if I went to
the Western I would be hospitalized, put on the right medications and
I could go to their clinic after for the medications prescribed for
the dystonia and other illnesses. However I couldn't make clinic
appointments, and clearly the promise of the Toronto Western
hospitalizing me and getting me on the right medications was not the
case either.
What I have had to endure for years,
until this partly shining moment is beyond comprehension. I am still
left with keeping myself un-paralzed every day and the daunting task of finding an
in-house doctor with hospital privileges, or go to a clinic appointmentswhich I
am unable to do since 2004, never knowing until the last minute if my condidtion would be stablized and enough energy to get out. They and will not address the extensive medical care I
have been denied even if I make it there in short order, they will
set up one appointment at a time that I couldn't do prior to being
repeatedly brain and body damaged.. Or take private ambulance until
they get the dystonia spasming and paralysing under control, and of
course I have enough energy, and not in too my pain from the
Fibromyalgia and ME/CFS that has left me mostly bed confined and
greatly worsened over the years as has the Hepatitis C.
Or I keep calling 911 every day when I
paralyse until they hospitalize me, or a in-house doctor appears as soon as possible through health care connect which can take months, and I had to have medical files shut off to any new health care. I don't even know when I can speak or pick up the phone or get to the door, nor I have I since mid-2003. I am able to get the dystonia stablzied for short periods of time and never know when or for how long. I have had short spurts of improvement and others where the dystonia progressed rapidly, all wosening the already severe ME/CFS.
The daunting task of the Canadian Medical system, when one is severely ill for 20 years, and has been repeatedly brain and body damaged, and doctors don't like high maintenance cases. Where is the law written you need a family doctor to be hosptialized first. If I was in a car accident and had this much damage, let alone ill for 20 years, I would have been hosptialized for a period of time with extensive testing, diagnostics, care, and supports to recover
It's long over due the medical profession picked up the peices and give me the extesnive medical care and supports I was and am entitled to since January 2003. That I have survivied this long is beyond belief.
